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Accepted: 30 April 2016
DOI: 10.1111/ecc.12529
ORIGINAL ARTICLE
“What about diet?” A qualitative study of cancer survivors’
views on diet and cancer and their sources of information
R.J. Beeken PhD, Senior Research Associate | K. Williams MSc, PhD Student | J. Wardle PhD, Professor of Clinical Psychology † | H. Croker PhD, Senior Research Dietitian
Department of Epidemiology and Public
Health, Health Behaviour Research
Centre, University College London, London,
UK
Correspondence
Rebecca J. Beeken, Department of
Epidemiology and Public Health, Health
Behaviour Research Centre, University
College London, London, UK.
Email: [email protected]
Given the abundance of misreporting about diet and cancer in the media and
online, cancer survivors are at risk of misinformation. The aim of this study was
to explore cancer survivors’ beliefs about diet quality and cancer, the impact on
their behaviour and sources of information. Semi-­structured interviews were conducted with adult cancer survivors in the United Kingdom who had been diagnosed
with any cancer in adulthood and were not currently receiving treatment (n = 19).
Interviews were analysed using Thematic Analysis. Emergent themes highlighted
that participants were aware of diet affecting risk for the development of cancer,
but were less clear about its role in recurrence. Nonetheless, their cancer diagnosis
appeared to be a prompt for dietary change; predominantly to promote general
health. Changes were generally consistent with healthy eating recommendations,
although dietary supplements and other non-­evidence-­based actions were mentioned. Participants reported that they had not generally received professional
advice about diet and were keen to know more, but were often unsure about
information from other sources. The views of our participants suggest cancer survivors would welcome guidance from health professionals. Advice that provides
clear recommendations, and which emphasises the benefits of healthy eating for
overall well-­being, may be particularly well-­received.
KEYWORDS
beliefs, cancer survivorship, diet, information, knowledge, media
1 | INTRODUCTION
studies have shown that a low-­fat/high-­fibre diet is protective against
With increasing numbers of people surviving cancer due to earlier de-
dence of an increased risk of breast cancer recurrence from consuming
tection and better treatments (Maddams, Utley, & Møller, 2012), there
a “Western diet” (Kroenke, Fung, Hu, & Holmes, 2005; Patterson, Cad-
is growing interest in the potential of lifestyle factors, such as diet, as a
mus, Emond, & Pierce, 2010).
progression of breast, colorectal and prostate cancers, and there is evi-
way of reducing the late and long-­term effects of cancer. There is good
The mechanisms linking dietary fat intake with cancer outcomes are
evidence that a healthy diet (plant-­based with limited intake of high
not well understood but are thought to be related to sex hormones
calorie foods, red meat and processed meats) can help prevent cancer
such as oestrogen. For example, dietary fat intake has been shown
(Cancer Research UK, 2015; WCRF and AICR, 2007). Observational
to increase levels of oestrogen in the blood, which may promote the
†
In memory of Professor Jane Wardle.
development of breast cancer in women (Wu, Pike, & Stram, 1999).
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided
the original work is properly cited
Eur J Cancer Care 2016; xx: 1–10
wileyonlinelibrary.com/ecc
© 2016 The Authors. European Journal of Cancer
Care Published by John Wiley & Sons Ltd.
1
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Beeken et al.
Fibre is thought to be protective against colorectal cancer because it
cancer survivors in the United Kingdom, where several people reported
dilutes faecal contents, increases stool weight and decreases gastro-
actively try to seek out further information about lifestyle factors such
intestinal transit time, potentially reducing exposure to carcinogens
as diet (Anderson, Steele, & Coyle, 2013).
(WCRF & AICR, 2007). Dietary fibre may also lead to the production of
Active information-­seeking from media sources has been linked
short-­chain fatty acids in the colon, which have been shown to promote
to increased fruit and vegetable consumption among colorectal can-
apoptosis, potentially reducing the risk of cancer developing (WCRF
cer survivors (Lewis et al., 2012), and exposure to health news has
& AICR, 2011). On the other hand, intervention studies suggest that
been shown to increase knowledge about dietary cancer risks (Stryker,
diet may influence outcomes indirectly via its role in energy balance
Moriarty, & Jensen, 2008). However, when searching in popular media
(Chlebowski et al., 2006; Pierce et al., 2007). However, cancer survivors
or online, cancer survivors are likely to encounter a wealth of informa-
(defined as “all people who are living with a diagnosis of cancer, and
tion, not all of which will be reliable and accurate. There is an abun-
those who have recovered from the disease” [WCRF & AICR, 2007]) are
dance of media misreporting of the dietary factors that are linked to
also at increased risk of second primary cancers as well as other chronic
cancer risk (Goldacre, 2009) that could be misleading to patients, par-
conditions such as diabetes, osteoporosis and cardiovascular disease
ticularly if they believe the sources to be trustworthy. Previous studies
(Brown, Brauner, & Minnotte, 1993; Travis et al., 2006), and diet is an
have demonstrated that survivors do not rate media sources all that
important modifiable factor that could reduce these risks, thereby pro-
highly for general information about their disease and treatment (Chen
moting their long-­term health. Dietary change may also impact quality
& Siu, 2001), although one study found that those who use the Inter-
of life in cancer survivors, particularly for those diagnosed with pros-
net believe this to be a high-­quality source (Mills & Davidson, 2002).
tate, breast and colorectal cancer ­(Kassianos, Raats, Gage, & Peacock,
However, these studies did not explore survivors’ use of the media for
2015).
information about diet and were conducted some time ago. Determin-
Previous studies suggest that few cancer survivors attribute the
development of their cancer to a poor diet (Willcox, Stewart, & Sitas,
2011). However, little is known about whether cancer survivors believe
ing cancer survivors’ sources of information about diet and cancer will
help understand why they hold particular beliefs about these factors.
Given that little is known about survivors’ beliefs about the impor-
diet to be important for their long-­term health, post-­diagnosis. A recent
tance of diet post-­diagnosis and what guides dietary choices post-­
survey of 3,300 colorectal cancer survivors found that over 20% would
diagnosis, a qualitative methodology was chosen to explore this issue.
like more advice on diet and lifestyle, suggesting that many do not feel
Qualitative research enables us to capture a range of views and to
sufficiently informed in this area (Department of Health-Quality Health.,
explore why those views are held. Although there are many benefits
2012). Some survivors may want information about diet because of
of quantitative methodologies, a qualitative study enables an in-­depth
specific nutritional needs or side effects post-­treatment, whereas oth-
exploration of cancer survivors’ beliefs about the role of diet in their
ers may want more information for their general health or to prevent
long-­term health and helps us to better understand the sources behind
recurrence. Previous studies with breast cancer survivors have found
their beliefs and dietary choices.
that some are aware that diet may play a role in reducing cancer recur-
This study therefore aimed to explore, with a qualitative method-
rence (Burris, Jacobsen, Loftus, & Andrykowski, 2012; Weiner, Jordan,
ology, cancer survivors’ beliefs about the role of diet in their long-­term
Thompson, & Fink, 2010), but survivors are often unsure what consti-
health and survival, and their sources of information. This could ulti-
tutes a healthy diet (Maley, Warren, & Devine, 2013). Some studies
mately inform the provision of evidence-­based dietary information to
have shown that cancer survivors report trying to eat a healthy diet
cancer survivors, and the development of effective dietary interventions.
following their diagnosis (Lim, Gonzalez, Wang-­Letzkus, Baik, & Ashing-­
Giwa, 2013; Maskarinec, Murphy, Shumay, & Kakai, 2001; Meraviglia &
Stuifbergen, 2011; Satia, Walsh, & Pruthi, 2009; Wang & Chung, 2012),
2 | METHODS
however it is unclear what guides these dietary choices.
Many organisations have lifestyle guidelines for cancer prevention
(Kushi et al., 2012; NHS Choices, 2014; WCRF and AICR, 2007), but
2.1 | Participants and recruitment
recommendations for cancer survivors are more limited because of
This was a qualitative interview study with adult cancer survivors
insufficient evidence linking diet directly to cancer outcomes. Those
(age ≥18 years) living in the United Kingdom, who had been diag-
that do exist therefore either refer to guidelines for cancer preven-
nosed with any cancer during adulthood and were not currently
tion (WCRF and AICR, 2007) or focus more on acute health and psy-
receiving treatment for cancer. Because there are few tailored dietary
chosocial outcomes or nutritional needs as a consequence of treat-
recommendations for survivors, and we were interested in beliefs
ment, rather than long-­term survival (Schmitz et al., 2010). Surveys
about the benefits of diet for long-­term health and survival in gen-
with health professionals suggest that few discuss lifestyle factors,
eral, as opposed to nutritional needs specific to certain cancers/
including diet, with their cancer patients (Daley, Bowden, Rea, Bill-
treatments, we sought to recruit a range of survivors. This also
ingham, & Carmicheal, 2008; Macmillan Cancer Support/ICM, 2011).
meant we would be representing a wide range of views, applicable
Insufficient professional advice coupled with a desire for information
to the wider survivorship population as opposed to focusing on a
may lead some cancer survivors to seek out information about diet
more specific group. Interviews were chosen over focus groups as
themselves. This was found in a recent qualitative study of colorectal
we were interested in hearing about patients’ individual beliefs and
Beeken et al.
| 3
experiences, rather than determining a group consensus. We did
2006). Thematic analysis was chosen to provide a rich description
not want individuals’ unique beliefs and experiences to be influenced
of the data, and to identify themes at an explicit level using a
by group discussions or concerns that others might view their beliefs
realist approach (Braun & Clarke, 2006). The first three transcripts
to be “incorrect”. Telephone interviews also encouraged individuals
were reviewed independently by three researchers (KW, HC and
to take part that might have otherwise been put off by a lack of
RB) who each generated an initial list of codes. These lists were
flexibility around time (e.g. because of work commitments) and loca-
then amended and refined through discussion between the
tion (e.g. because of distance). A qualitative methodology was chosen
researchers until a single list was agreed. A researcher (KW)
because we were not seeking to test a hypothesis, but rather to
entered the list of codes into NVivo version 10 (QSR International
obtain a rich source of information to better understand the rationale
Pty Ltd, 2012) and coded all the transcripts, with codes added
behind dietary beliefs and changes in this population (Holliday, 2010).
to the list where necessary. A random selection of transcripts
The study was advertised via an advert on Cancer Research UK’s
(n = 5) were coded by a second researcher (HC) to check for
“Cancer Chat” online forum (Cancer Research UK, 2014) and by post-
reliability. Inter-­rater reliability for the coding was generally high
ers and flyers displayed in the University College Hospital Macmillan
(>.7) with any discrepancies discussed and resolved in discussion.
Cancer Centre. Potential participants were asked to contact the study
Once the coding had been agreed, KW and RB reviewed the
team by telephone or email to check eligibility, and a follow-­up tele-
coded transcripts to search for common themes. These themes
phone call was arranged for those making contact by email. During this
were reviewed and refined, named and each given a written
telephone call, information was given about the study with an oppor-
description.
tunity to ask questions. An interview was then arranged for those
interested in taking part, either face-­to-­face (at the University) or over
the telephone, depending on the participant’s preference. A study
3 | RESULTS
information sheet, consent form and brief socio-­demographic questionnaire were mailed for completion before the interview took place.
We aimed to recruit until it was felt that saturation had been reached.
3.1 | Participants
In line with other qualitative studies in similar groups, we anticipated
Twenty-­four cancer survivors made contact having seen an advert
that approximately 15 participants would be required for this to be the
for the study. Of these, two were not eligible because they lived
case (Meraviglia & Stuifbergen, 2011; Thewes, Butow, Girgis, & Pen-
abroad, two had contacted us about issues unrelated to our study
dlebury, 2004). Ethics approval was granted by the University College
(they were referred to the Cancer Research UK nurse help-­lines)
London Research Ethics Committee, reference 0793/004.
and one did not respond to our attempts to contact them back.
Nineteen interviews were conducted with 11 women and 8 men,
2.2 | Data collection
aged between 24 and 77 years (Table 1); 5 face-­to-­face and 14
by telephone. All interviews were conducted with only the par-
Socio-­demographic questions covered gender, age, marital status,
ticipant and interviewer present. Of the 19, 7 were recruited via
education and employment. It also included a check question about
the online forum and 12 were recruited through flyers. After the
their cancer diagnosis (“Have you ever been diagnosed with can-
target number of 15 interviews was achieved, the authors discussed
cer”), the primary cancer site (“If yes, which type”) and the date
the themes emerging and whether saturation had been reached
of diagnosis (“When were you diagnosed”).
(Morse, 2000). Although it appeared that saturation was reached
Semi-­structured interviews were carried out by three female
at this point, a further four interviews were conducted to confirm
researchers (KW, HC and RB) between March and July 2013. Inter-
this. All participants described their ethnicity as White British, the
views lasted approximately 1 hr, and were recorded and transcribed
majority were married (68%) and half were working in some capac-
verbatim. A topic guide (Figure 1) was developed by HC, KW and RB to
ity (53%). Educational attainment varied although the majority (58%)
guide the interviews and consisted of a series of open questions cov-
had a higher education qualification. Breast cancer was the most
ering beliefs about the relationship between diet and cancer, sources
common diagnosis (37%) and the majority of participants had been
of information and changes to diet following cancer diagnosis. This was
diagnosed in the past 5 years (63%).
part of a broader interview that also covered participants’ views about
other lifestyle factors and cancer. Interviewers were trained to have
minimal verbal input and prompt only when appropriate (Oppenheim,
3.2 | Themes
1992). The topic guide was piloted with two participants whose data
A number of themes emerged, which were as follows: (1) diet is
were included because no substantial changes were required.
a potential cause of cancer development, (2) diet is important for
long-­term health, (3) a cancer diagnosis prompts dietary change
2.3 | Analysis
and (4) a desire for more information about diet post-­diagnosis.
There were no obvious differences in responses by cancer type,
Data were analysed using Thematic Analysis, a qualitative method
age or gender, so results are presented from the whole
for identifying, analysing and reporting themes (Braun & Clarke,
sample.
| 4
Beeken et al.
Topics
Introductions and
background
Introductions
Cancer history
Social context
Beliefs about factors
involved in causing
cancer and in keeping
healthy in the future
Experiences with
making changes to
behaviour since
recovering from
cancer
Causal factors
Keeping healthy in the
future (e.g. reducing
risk of cancer
recurrence or of longterm health condition
such as heart disease
or diabetes)
Have you tried
anything/ doing
anything different
from before your
diagnosis?
Prompts
Who we are and aims of study
Check length of interview (45-60 mins)
okay
When diagnosed
Type of cancer
Treatment
Recovery
Brief overview of family set up and any
support received/ receiving in relation to
cancer diagnosis/ treatment/ recovery
Any particular things related to diet or
physical activity?
Anything else (e.g. smoking, alcohol,
stress, weight)?
Any particular things related to diet or
physical activity?
Anything else (e.g. smoking, alcohol,
stress, weight, supplements)
Any particular things related to diet or
physical activity?
Anything else (e.g. stopping smoking,
cutting down alcohol, reducing stress,
losing weight, taking supplements)?
Reasons for doing this and whether think
helping?
Plan to continue?
Sources of
information regarding
lifestyle and longterm health
Who from
Have doctors/ other health professional/
anyone else talked about this?
Any other sources of information?
How received
How did you feel about getting this
information – was it welcome?
Any other information you wanted or that
you have tried to access?
If so, what type of information, when and
from whom would you prefer it?
Other information
wanted
Anything else?
F I G U R E 1 Topic guide for qualitative interviews
3.2.1 | Diet is a potential cause of cancer
development
Participants described how they had tried to understand what might
possibly something to do with my diet” (105, female, 51 years,
breast cancer), “It’s just that so many people these days, sadly, are
getting cancer and I don’t know whether it’s the water or whether
it’s the food they eat” (114, female, 74 years, breast cancer).
have caused their cancer: “for me it was like, well where did this
Participants mentioned specific foods that they thought may con-
come from, what’s caused it?” (101, male, 60 years, non-­Hodgkin
tribute to the development of cancer. Occasionally, this related to the
lymphoma), “Once I got the cancer it was like, ‘Ok, you have to
development of their own cancer: “It could be the result of eating
find a reason for this’” (105, female, 51 years, breast cancer). This
too many crisps…I’m a bit of a crispaholic” (101, male, 60 years, non-­
had led them to question if diet had played a role: “I’ve thought
Hodgkin lymphoma), but more often it was discussed in relation to
of food – is there food I am eating what’s causing this?” (110,
the onset of other types of cancer, or cancer in other people: “If you
female, 51 years, breast and bladder cancer), “I think it’s absolutely
eat lots of fatty foods you’re going to get, I don’t know, some sort of
fascinating to know whether it is partly our diet” (103, female,
cancer, diabetes, maybe, but, erm, that wasn’t the case when it came
62 years, breast cancer and non-­Hodgkin lymphoma), “I honestly
to mine” (108, male, 24 years, NET), “I think additives are a danger,
don’t think I could have been doing anything wrong, apart from
MSG and all this, I see it as a health danger but whether it can cause
Beeken et al.
T A B L E 1 Socio-­demographic and health characteristics
Socio-­demographic details
Total sample (n = 19)
Gender: n (%)
Male
Female
8 (42.1)
11 (57.9)
Age (years): mean ± SD (range)
59 ± 13.11 (24–77)
Ethnicity: n (%)
White British
19 (100.0)
Marital status: n (%)
Single/never married
Married/living with partner
Married separated from partner
Divorced
2 (10.5)
13 (68.4)
1 (5.3)
3 (15.8)
Highest educational status: n (%)
Degree or higher degree
Higher education below degree
Secondary school qualifications
No formal qualifications
Other
9 (47.4)
2 (10.5)
5 (26.3)
1 (5.3)
2 (10.5)
Employment status: n (%)
Employed full time
Employed part time
Self-­employed
Retired
Disabled or too ill to work
5 (26.3)
2 (10.5)
3 (15.8)
8 (42.1)
1 (5.3)
| 5
be a contributing factor to the cancers growing” (109, male, 77 years,
colon cancer).
3.2.2 | Diet is important for long-­term health
Participants talked about dietary factors that they thought might
influence their long-­term health. Generally, they did not have strong
beliefs about specific dietary components that could prevent recurrence, although they sometimes mentioned foods in relation to
having had cancer: “I read that if you have a carcinoid tumour in
your body, still, you need to avoid…spicy food such as curries”
(108, male, 24 years, NET), “Like [for] bowel cancer, there are certain
foods you are recommended to try and avoid. I think red meat is
one” (104, male, 69 years, prostate cancer). More frequently they
expressed general beliefs about specific foods that are healthy: “eating tomatoes, apparently, is supposed to be good for you, and nuts,
tomatoes, anything, apparently, red-­coloured is supposed to help”
(104, male, 69 years, prostate cancer), “Plenty of green veggies, i.e.
broccoli and greens and things like that” (114, female, 74 years,
breast cancer) or unhealthy: “my understanding is that white flour
and sugar are kind of poison to your body” (105, female, 51 years,
breast cancer). Methods of cooking that they believed were bad
for them were also mentioned: “Just the fact that the way they’re
manufactured, the stuff’s not fresh, it’s not getting to you until it’s
a
Cancer diagnosis : n (%)
Breast
Colorectal
Prostate
Lung
Thyroid
Non-­Hodgkin lymphoma
Hodgkin lymphoma (Hodgkin disease)
Testicular
Bladder
Melanoma
Neuroendocrine tumour (NET)
7 (36.8)
1 (5.3)
1 (5.3)
1 (5.3)
2 (10.5)
3 (15.8)
1 (5.3)
1 (5.3)
1 (5.3)
2 (10.5)
1 (5.3)
Date of diagnosis: n (%)
<5 years ago
5–10 years ago
11–20 years ago
>20 years ago
12 (63.2)
4 (21.1)
2 (10.5)
1 (5.3)
been through all these processes….and it’s kept in these polystyrene-­
type dishes and stuff which you stick in the microwave or stick in
the oven” (105, female, 51 years, breast cancer). Participants emphasised the importance of a balanced diet: “I believe you should have
a little bit of everything. I am not one of these who think fruits
and vegetables are going to change my life” (110, female, 51 years,
breast and bladder cancer), “I think everything in moderation is the
way” (116, male, 68 years, lung cancer).
Participants mentioned dietary supplements and views were polarised. Some believed that they were good for their health: “Selenium
a
Total comes to >100% as two people had been diagnosed with more than
one type of cancer.
is very good for you” (114, female, 74 years, breast cancer), “manuka
honey…it’s meant to have antibacterial” (112, female, 69 years, non-­
Hodgkin lymphoma), “magnesium…that’s good for the bones” (114,
female, 74 years, breast cancer), although they did not specifically
mention them in relation to cancer cure or prevention of recurrence.
In contrast, others believed dietary supplements could be harmful to
cancer or other conditions, I don’t know” (116, male, 68 years, lung
health and even cause cancer: “there are some supplements that will
cancer). When participants did mention specific foods in relation to
give you cancer” (107, male, 50 years, melanoma), “I fundamentally
causing cancer, there were generally accurate beliefs. For example,
disagree with them [supplements]. I am a pharmacist’s daughter and
red meat and burnt food were described as potential causal factors:
just think it’s all rubbish” (113, female, 47 years, thyroid cancer). Those
“I sometimes think that red meat causes possibly bowel cancer” (102,
who expressed negative attitudes towards supplements in this sample
male, 38 years, Hodgkin disease), “When the barbecue’s black, that
were from more academic backgrounds or had family members who
seems to be a big no-­no, is it carcinogenic or something, and I think
worked in healthcare.
the cancer develops on it or something” (105, female, 51 years, breast
cancer). Others mentioned that fibre may help prevent cancer: “Certain nuts, apparently the high fibre in it’s supposed to help stop you
getting the cancer” (104, male, 69 years, prostate cancer), “I think if
3.2.3 | A cancer diagnosis is a prompt for dietary
change
you have the right diet and plenty of roughage, everything is pushed
Although participants were often aware of the benefits of a healthy
out on a regular basis, but if it sits in there three or four days, this can
balanced diet, it was not something that they had necessarily paid
| 6
Beeken et al.
attention to until they were diagnosed with cancer: “I never really
years – magnesium, because that’s good for the bones, selenium, as
read up on [lifestyle] before…maybe I did and I just ignored it
I said, vitamin C, I take that, and also I take a vitamin B which is very
because we were all fine…then once I got the cancer…all the
good” (114, female, 74 years, breast cancer), “I have a high dose of
things that you used to do that they’re saying are bad for you,
cod liver oil” (116, male, 68 years, lung cancer), “I take multivitamins
you’re trying to cut out” (105, female, 51 years, breast cancer).
and minerals every day” (108, male, 24 years, NET). For the most part,
Participants had similar stories about how their cancer diagnosis
no explicit reasons for taking them were given and participants did
had prompted them to make changes to their diet: “I have really,
not necessarily report any awareness of what they should/should not
really looked at my diet since I was diagnosed with a lymphoma”
be doing. One participant said: “Selenium is supposed to be preven-
(103, female, 62 years, breast cancer and non-­Hodgkin lymphoma),
tion from cancer” (114, female, 74 years, breast cancer) and therefore
“you become acutely sensitised to anything cancer-­related….anything
reported taking it regularly although she was unclear where this infor-
carcinogenic…you become really tuned into in terms of foodstuffs”
mation had come from. In contrast, others mentioned that they avoided
(101, male, 60 years, non-­Hodgkin lymphoma). Participants did
supplements. For some this was because they had been directed to
occasionally mention that they had made dietary changes to avoid
for treatment reasons: “I’ve steered clear of all of them [supplements]
cancer recurrence: “I read that this has more chance of coming
because of the medication that I’m on” (115, female, 63 years, breast
back, then I have to cut out the only things that I can cut out
cancer), “I don’t take supplements” (117, male, 65 years, testicular
now. I can’t stop smoking because I never did, and I can’t stop
cancer). Some participants cited that their reason for avoiding supple-
alcohol because I don’t. So the only thing I’ve got to work on is
ments was because they preferred to get their vitamins and minerals
my diet” (105, female, 51 years, breast cancer). However, they
from their diet: “It was more focused on…trying to increase my vita-
seemed to be more concerned about their long-­
term health in
mins level naturally as opposed to taking supplements” (103, female,
general and wanted to give themselves the best chance at living
62 years, breast cancer and non-­Hodgkin lymphoma), “I don’t take pills
a healthy life having survived their cancer diagnosis: “I think I’m
very often. No, nothing. Just an ordinary, really healthy, sensible diet”
probably more worried about [high blood pressure] than I am
(119, female, 67 years, melanoma).
about getting cancer again” (115, female, 63 years, breast cancer),
“I just felt that [dietary changes] would be better for my health”
(114, female, 74 years, breast cancer). One participant also mentioned that weight management was a factor in their dietary choices:
3.2.4 | A desire for more information about diet
post-­diagnosis
“If I am being honest, we did it [eat more healthily] more as part
Participants were positive about the idea of getting dietary infor-
of the weight-­loss plan” (106, female, 50 years, breast cancer).
mation, but did not generally recall receiving any from a health
For these participants, eating a healthy balanced diet involved eat-
professional or had received only basic information or advice about
ing more of specific healthy foods, typically more fruit and vegetables:
lifestyle: “I didn’t really get any advice about that…if anything, it
“I eat a lot more fruit than I ever did” (102, male, 38 years, Hodgkin
was just try and eat a well-­balanced diet” (110, female, 51 years,
disease). Some mentioned that they try to buy organic foods whenever
breast and bladder cancer), “Well, shamefully, I wasn’t given much
they could as they believed this was better for them: “I try to go as
information” (111, female, 63 years, thyroid cancer), “All I got, as
organic as I can” (105, female, 51 years, breast cancer), “I am also into
I said, was a one-­off letter with a piece of paper in from the
the organic lentils, sprouts and organic… you know, all better food,
dietitian, saying how I can help to restore, recover and boost my
much better quality of food” (111, female, 63 years, thyroid cancer).
phosphate levels and above, which is a very, very finely focused
Participants also talked about how they tried to avoid or cut down on
view of one aspect, one tiny aspect, of recovery from cancer”
particular unhealthy foods. They mentioned a range of foods but these
(101, male, 60 years, non-­Hodgkin lymphoma). It was reported
were typically fatty, sugary foods and processed meat: “Cutting down
that they had asked for dietary information: “I sort of said to my
on fatty food, I’ve reduced my intake of crisps” (101, male, 60 years,
consultant, ‘What about diet?’” (103, female, 62 years, breast cancer
non-­Hodgkin lymphoma) and “Red meat, definitely, was reduced”
and non-­Hodgkin lymphoma), and “should I be doing anything about
(103, female, 62 years, breast cancer and non-­Hodgkin lymphoma), “I
my diet or anything while I’m doing this?” (105, female, 51 years,
used to eat biscuits and cakes, cakes for breakfast, loved it, always
breast cancer). Some had even paid to see a health professional
loved cake for breakfast but I haven’t had cake for ages, haven’t had
privately because they were not given sufficient information: “the
cake for ages. I might have an occasional biscuit but very rarely. So
other private appointment was the dietitian because there was
my diet has changed radically, as has my life” (111, female, 63 years,
nothing at the hospital for me” (105, female, 51 years, breast
thyroid cancer). Others emphasised that they just tried to eat healthily
cancer). When participants had received advice from health profes-
and be sensible rather than following a particular diet or eating spe-
sionals, this was not always consistent and sometimes added to
cific foods: “Just an ordinary, really healthy, sensible diet” (119, female,
their confusion about what they should do: “it was suggested by
67 years, melanoma).
my breast care nurse that selenium might be a suitable supplement
Participants mentioned taking dietary supplements to benefit their
to take and to take it with vitamin A, C and E, as a combo…my
health. Again the logic seemed to be about general health rather than
current consultant doesn’t seem to favour supplements” (103, female,
a particular anti-­cancer property: “I have been taking supplements for
62 years, breast cancer and non-­Hodgkin lymphoma).
Beeken et al.
As professional advice seemed to be lacking, participants mentioned that they had researched information about lifestyle them-
| 7
4 | DISCUSSION
selves. Participants reported seeking advice from cancer charities,
This study aimed to explore cancer survivors’ beliefs about the
and finding this helpful: “the information I got was the very, very good
role of diet quality in cancer and to understand their sources of
[charity name] booklets” (103, female, 62 years, breast cancer and
information. The results suggest that survivors are broadly positive
non-­Hodgkin lymphoma), “there were lots of booklets on all sorts of
about eating healthily, and participants reported making, or at least
things – living with cancer, the emotional aspects, the travel insur-
trying to make, some changes following their cancer diagnosis.
ance, diet, all sorts of things” (112, female, 69 years, non-­Hodgkin
Some specific foods and nutrients were mentioned as healthy (e.g.
lymphoma), “I went to [charity name] for most of my literature” (106,
nuts, tomatoes, red foods, green vegetables, selenium, manuka
female, 50 years, breast cancer), “I phoned, once, …and they were
honey) or unhealthy (e.g. red and processed meat, white flour,
fairly helpful” (111, female, 63 years, thyroid cancer). One participant
sugar, spicy food, processed food) but on the whole, participants
also mentioned contacting a local organisation: “I phoned an organisa-
perceived a healthy balanced diet as more important than specific
tion in [location] to ask about diet because this has been my problem;
foods or supplements. Although cancer was often a prompt for
I don’t know what’s good and what’s bad and whatever” (111, female,
addressing lifestyle change, a healthy diet after diagnosis tended
63 years, thyroid cancer).
to be based on the belief that this was good for general health
Survivors had also used the Internet for their research: “I went
rather than specifically connected to cancer outcomes. Where diet
onto the Internet and found a few things. I just put in ‘anti-­cancer
was discussed specifically in relation to cancer, this was most
foods’ and got what came up” (105, female, 51 years, breast cancer),
often in connection with causing cancer as opposed to a role in
“I saw on the Internet, someone suggested a book”, “the Internet for
cancer recurrence. However, in line with previous studies (Wold,
hours and hours and hours, and printing off and printing off…they
Byers, Crane, & Ahnen, 2005), participants did not attribute the
gave me a website to have a look at and I had a look at it, a thyroid
development of their own cancer to diet. Diet was cited as an
cancer site. I’ve looked at all of them” (111, female, 63 years, thyroid
important risk factor for cancer in general and in relation to other
cancer). Participants mentioned online charity forums as a source of
people rather than themselves. Participants reported not receiving
information about lifestyle: “you get a lot of people with lots of ideas
dietary information from a health professional, and obtaining their
and suggestions” (101, male, 60 years, non-­Hodgkin lymphoma).
information from charities, the Internet and the media.
However, participants said that they had difficulty sifting the reliable
Our participants discussed how their cancer diagnosis had
information from the wealth of nonsense online: “there is so much
prompted them to think about dietary changes. This may reflect a
information and so many claims and counter-­claims, some good-­
desire to take control or have some sense of agency post-­diagnosis
hearted or good-­willed, some just out to make money and some just
(Kassianos, Coyle, & Raats, 2015), and is also consistent with the
plain scams that it’s just impossible to tell one from another” (101,
idea that a cancer diagnosis may be a “teachable moment”, in which
male, 60 years, non-­Hodgkin lymphoma), “when I was first diagnosed
individuals are motivated to adopt health behaviours (McBride &
I went on a heck of a lot of different sites…I found some of them
Ostroff, 2003). However, this hypothesis is at odds with population
are downright misleading” (104, male, 69 years, prostate cancer),
studies which have found little evidence of sustained positive health
“the worst place of all is online…there are a lot of deliberately misin-
behaviour changes as a result of a cancer diagnosis (Kim et al., 2013;
forming websites…go on any cancer patients’ board…people will be
Milliron, Vitolins, & Tooze, 2014; Williams, Steptoe, & Wardle, 2013).
promoting the vitamin-­type supplements. And then there’s the magic
This may be because patients are not given the tools (advice, sup-
fruit…, the noni and soursop…it’s all claptrap” (107, male, 50 years,
port) to realise the potential of the “teachable moment”, or have other
melanoma). One participant talked about how he had tried to clarify
competing interests that take priority over dietary change. However,
online information by reading research papers: “I read the second-
it also suggests people may be overestimating the extent to which
ary sources in the cases where there seemed to be something in it. I
they have made lifestyle changes. This is consistent with findings that
had a look at the primary sources…it was all groundless” (107, male,
people think that their behaviours are already good (Anderson, Steele,
50 years, melanoma).
In addition to doing their own research, participants mentioned
& Coyle, 2013; Dowswell et al., 2012; Satia et al., 2009) and on the
whole they report continuing these post-­diagnosis (Satia et al., 2009).
obtaining information about lifestyle incidentally from the media: “I
Our participants reported making changes that included trying
keep an eye on reports and media” (116, male, 68 years, lung cancer),
to follow a “healthy balanced diet”, reducing specific foods (e.g. high
“I get it by reading the paper” (117, male, 65 years, testicular cancer),
fat foods, red meat) and increasing specific foods (e.g. fruit). Although
“if there’s an article in the newspaper, I’ll read that, on cancer preven-
participants reported that their cancer diagnosis had prompted them
tion” (118, female, 64 years, breast cancer), “you pick things up in the
to make these positive dietary changes, the motivations for doing
press” (115, female, 63 years, breast cancer). Participants also cited
this seemed to be driven by beliefs about the importance of diet for
‘facts’ about diet but could not recall where they had obtained particu-
improving general health rather than cancer-­related (e.g. to reduce
lar information: “It’s a well-­known fact [that supplements such as sele-
their risk of recurrence). This is consistent with other studies that have
nium and green vegetables are good for you]” (114, female, 74 years,
shown general health to be an important motivation for healthy eating
breast cancer).
in adults, and particularly for older adults (Dijkstra, Neter, Brouwer,
| 8
Beeken et al.
Huisman, & Visser, 2014). It is also not unreasonable that cancer out-
and media. This was also found in a recent qualitative study of prostate
comes are not a key driver for dietary change given that there is not
cancer survivors’ perceived influences on dietary change (Kassianos,
yet evidence that diet quality has a direct influence on outcome for
Coyle, et al., 2015). Use of informal sources may in part explain why
all cancers. In addition, although some studies have found evidence
some of our participants’ beliefs about diet were less well established
for an effect of diet on overall morbidity (Chlebowski et al., 2006), the
(e.g. white flour, sugar and food in polystyrene containers being harm-
precise mechanisms are not yet understood, and the relationship may
ful; manuka honey and dietary supplements being beneficial) (WCRF
well be indirect, for example through the role of diet in overall energy
and AICR, 2007). Dietary advice is poorly reported in the media (Coo-
balance.
per, Lee, Goldacre, & Sanders, 2011; Goldacre, 2009); up to two-­thirds
The fact that cancer was not mentioned in relation to motiva-
of dietary health claims made in UK newspapers have been shown
tions for eating healthily also suggests cancer survivors may not be
to have insufficient evidence to support them, especially in tabloid
aware of the added benefits of a healthy diet after a cancer diagno-
newspapers (Cooper et al., 2011). Although our participants were able
sis—because they are at increased risk of conditions associated with
to find some reliable sources of information on charity websites, they
lifestyle (Brown et al., 1993; Travis et al., 2006). Public awareness of
reported difficulties in knowing what to believe. Health professionals
the link between some aspects of lifestyle and cancer is known to be
could provide guidance in this area that would be welcomed.
low (Redeker, Wardle, Wilder, Hiom, & Miles, 2009) and the same may
This study had a number of limitations. Although the evidence for
be true for cancer survivors. On the other hand, it may simply be that
an association between dietary factors and cancer is stronger for certain
post-­diagnosis, individuals are more driven to change their diet by a
types of cancers (e.g. red and processed meat and colorectal cancer),
positive (feel good) approach as opposed to a preventive (don’t get
views and advice received by participants in our study did not appear to
sick) approach. Focusing on associations between diet-­ and cancer-­
vary based on their cancer type. However, given the small and heteroge-
specific outcomes may result in feelings of blame, personal guilt or
neous sample, it is difficult to draw firm conclusions about the absence
responsibility at one’s cancer diagnosis or recurrence (Bell, 2010),
or presence of any patterns based on participant characteristics, and
which patients may seek to avoid. There is some evidence that inter-
we were not seeking to do so. Our sample included people with various
ventions seeking to change diet can have a positive impact on quality
types of cancers, treatments and time since diagnosis, making it difficult
of life (Kassianos, Coyle, & Raats, 2015). Interventions framed in terms
to compare beliefs and experiences, although it gives a good overview
of the potential benefits of a healthy diet for overall well-­being and
of cancer survivors’ views. Results from this study must be interpreted
quality of life may be attended to more than those focused on risk
within the limitations of the sample. All participants were White British,
reduction.
relatively young, and well educated. Previous research has identified
Recommendations have been produced that suggest cancer survi-
different drivers for healthy eating in older adults and those from lower
vors should receive lifestyle counselling (Murphy & Girot, 2013; Tra-
socio-­economic groups. Although not apparent in our study, gender
vis, Demark Wahnefried, Allan, Wood, & Ng, 2013; WCRF and AICR,
and the role of partners and other family members, may also be import-
2007). However, our participants did not recall receiving professional
ant (Kassianos, Coyle, et al., 2015; Mroz & Robertson, 2015). Future
advice about diet. This may be because such information was pro-
research should seek to explore this in more depth.
vided, but at a time when patients were too burdened or overloaded
Furthermore, self-­selection bias could explain the generally pos-
to take the advice on board, and therefore do not recall it (James-­
itive responses to dietary change in the current study. Those inter-
Martin, Kockwaza, Smith, & Miller, 2013). However, surveys also indi-
ested in our study may be those with a long-­term interest in healthy
cate that many health professionals do not discuss lifestyle change
lifestyles, or those who have become interested since diagnosis. We
with their patients (Anderson, Caswell, Wells, & Steele, 2013; Daley
did not ask about pre-­diagnosis dietary habits except in the context
et al., 2008; Macmillan Cancer Support/ICM, 2011), and a recent sur-
of how things had changed post-­diagnosis. Bias may also have been
vey of oncology health professionals found that only half were aware
introduced by the interviewers; 2, health psychologists and a dieti-
of dietary guidelines for cancer survivors (Williams, Beeken, Fisher, &
tian. Participants’ awareness of these roles may have encouraged
Wardle, 2015). Lack of guidelines, the belief that diet would not affect
answers that were positive about healthy eating, although it was
cancer outcomes and not being the right person to give advice were all
emphasised that there were no right or wrong answers. We recruited
identified as barriers to providing dietary advice (Williams et al., 2015).
partly through an Internet forum meaning that some participants may
In line with previous research (Kassianos, Coyle, et al., 2015), our par-
be particularly motivated to find out information about their cancer,
ticipants placed importance upon receiving health professional advice
and may have higher Internet literacy. However, we balanced this out
on diet, but found the advice they did receive insufficient, and at times
by putting up posters in a cancer centre where people were attending
inconsistent. There is therefore a potential need to support health
routine appointments.
professionals to locate the current guidelines for cancer survivors, to
understand the evidence base with respect to long-­term outcomes
and to recognise how their role may be important for the delivery of
5 | CONCLUSIONS
this advice to patients.
With the lack of health professional advice, our participants
In conclusion, our findings suggest that cancer survivors are aware
reported seeking and obtaining dietary information from the Internet
of some dietary messages, such as to eat a balanced diet, and
Beeken et al.
report making dietary changes. Although often prompted by a
cancer diagnosis, these changes are made primarily because of a
desire to feel well and be healthy generally, rather than specifically
for disease prevention. The majority of patients’ information about
diet had been obtained from informal sources (e.g. online, media,
others) and there was some confusion over what constitutes a
balanced diet. Patients would welcome guidance from health professionals on diet. Interventions that provide clear dietary recommendations for those diagnosed with cancer, and which emphasise
the benefits of healthy eating for overall well-­being, may be particularly well-­received. Future research should seek to explore how
best to support health professionals to provide this advice.
ACKNOWLE DGME N TS
All authors are supported by funding from Cancer Research UK.
CO M PE TI NG I NTE R E S T S
The authors declare that they have no competing interests.
AUT HORS’ CONTRI BUTI O N S
HC and JW conceived of the study. All authors contributed to
the development of the topic guide. HC, KW, and RB conducted
the qualitative interviews. HC, KW, and RB analysed the qualitative interviews in NVivo and generated the list of themes. All
authors helped draft the manuscript. All authors read and approved
the final manuscript.
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How to cite this article: Beeken, R.J., Williams, K., Wardle, J. and
Croker, H. (2016), “What about diet?” A qualitative study of
cancer survivors’ views on diet and cancer and their sources of
information. European Journal of Cancer Care, 00: 1–10.
doi:10.1111/ecc.12529